Weekly Round Up – The Lisa Adams Edition

Time for this week’s round-up of the best of the blog posts which I’ve read over the past week. These are the posts that have moved me, taught me something, inspired me, and which I’ve wanted to share with you. Don’t forget if you have written a post which you would like readers to see, just leave a comment below.

One story dominated the blogosphere this week, that of Emma and Bill Keller’s newspaper articles on Lisa Adams. You came out in force to defend Lisa and share your own stories of how social media has made a positive impact in your own experience of cancer. With each new day more commentary emerged and it quickly became clear that there are many more “ethical” and psycho-social issues than appeared at first reading. As Nancy writes on her blog “perhaps we’ve only reached the tip of the proverbial iceberg”. I summarize the main issues I perceive below backed up with quotes from your blogs.

1. Lack of understanding of the psycho-social reasons for patient engagement in blogs and Twitter.

“The more I think about it, the more it seems this mess reflects how little major media and the public at large understand the epatient movement and cancer. The blogs, tweets and forum posts of actual cancer patients are invaluable to those dealing with the life-changing personal crisis that is cancer. Epatients like me share our experiences and learn from each other regarding the diagnostic process, terminology, second opinions, treatment options, side effects, research, clinical trials, palliative care, hospice, and dying with grace and dignity” writes Janet Freeman-Daily

Nancy of The Pink Underbelly points out that “The reasons for blogging and tweeting are as varied as the cancer patients themselves”; Lauren writes of blogging as a therapeutic outlet: “For me, writing about my cancer was like letting the floodgates open and all those cooped up things that had been making a racket in my head were set free”; while on Telling Knots , a blog about living with Stage IV cancer, the author writes of the “social interaction that is made so difficult by our physical condition but is facilitated through the new media” – a point echoed in Elizabeth’s words:

So many people with terminal disease spend their last years in isolation, even if when they are still able to work and carry out many daily responsibilities. Many of them don’t even “look sick” until much later in their disease progression. But their lives can be lonely and arduous. Social media can serve as a way for people to connect with others who understand.

Pam Ressler who has published scholarly research on the motivations of those who blog through illness, quotes from Malcolm Gladwell’s book “The Tipping Point” that “a critical mass needs to be achieved before an idea, trend, or social behavior crosses a threshold, tips, and spreads like wildfire.” Perhaps that time, writes Ressler, has come in the evolution of social media’s role in living with progressive chronic illness.

2. Lack of understanding of the e-patient movement

The rise of the epatient, a person who is fully engaged with their health, educated and empowered by the new media of the Internet and particularly through social media, has completely bypassed the Kellers. Brian Loew writing in the Healthcare Blog picks up on “a brilliant yet simple observation” by e-patient Liza Bernstein. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:

“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”

And Keller went on to describe what those experts thought. Lisa knows well that Lisa Adams is an expert.In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.” Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.

3. The “right” to judge

You were most riled up by the arrogance of the Kellers sitting in judgment of Lisa and those who discuss their illness online in such a public manner.

“The one unwritten rule among us is simple: don’t judge. Don’t judge. What works for me may not work for you. It’s all good, just don’t judge.” – The Pink Underbelly

“There are many ways to live, and just as many ways to die. Denial is an absolutely fine defense mechanism, as is feistiness. It is impossible—and arrogant—to adjudicate among them”. – Cameron Gearen

“This is not a question of ethics, Emma Keller; it is a social issue and an eschatological question (in the larger sense). It is not a social gaffe on the level of funeral selfies; it is an expression of our humanness, of our being as a social animal. Most importantly, it is not for you or anyone else to judge the decision of a dying woman.”- Telling Knots

4. Ethical Journalism

Many commentators were outraged that the Kellers took it upon themselves to question the ethics of sharing a human experience in the way that Lisa and a cohort of others do through social media, when they have shown scant regard for their own journalistic ethics. Both revealed personal emails without Adams’ permission – Emma Keller never told Adams she was planning on writing about her in this way. And Lisa herself has tweeted about how they have misrepresented the basic facts of her medical status. As Gayle Sulik, sociologist and author of Pink Ribbon Blues, writes on her blog “If there are ethics to tweeting your illness, I haven’t seem them. But there are clear ethics in journalism when in comes to, among other things, accuracy and confidentiality, two tenets the Keller campaign against Lisa Adams clearly breached. ”

Furthermore, as sociologist Zeynep Tufekci points out in an online article, that while Keller asked people on Twitter for their thoughts about Adams and the topic of tweeting about cancer, she didn’t respond to any of the discussion that she triggered by doing so. “Good journalists know that to understand a community, you have to spend time in it and embedded within it, not just read transcripts of snippets from a town-hall meeting. Social media is not a snapshot that can be understood in one moment, or through back-scrolling. It’s a lively conversation, a community, an interaction,” writes Tufekci.

Clearly, as Linda Holmes points out you can see in the Kellers’ articles “the deep skepticism so many people with long histories in traditional publishing have about social media, in part because they want to comment on it from outside, not inside.”

Both Kellers display an ignorance of the complexities and connectedness of online patient communities. Megan Garber writing in The Atlantic, points the finger at journalists “hungry for new insights, thirsty for new trends—who are saddling (Adams) with the freight of moral implication and then judging her for the audacity they infer.”

Sociologist Zeynep Tufekci pointed out in a piece entitled Social Media Is A Conversation, Not A Press Release , that while Emma Keller asked people on Twitter for their thoughts about Adams and the topic of tweeting about cancer, she didn’t respond to any of the discussion that she triggered by doing so.

Good journalists know that to understand a community, you have to spend time in it and embedded within it, not just read transcripts of snippets from a town-hall meeting. Social media is not a snapshot that can be understood in one moment, or through back-scrolling. It’s a lively conversation, a community, an interaction.

5. The language of cancer

Dr Kristen Garrison of the Midwestern State University has written that “the language of war dominates breast cancer discourse, pervading every aspect of the experience, and determining how the patient and others understand the illness.” This was on full display in Bill Keller’s article in particular where he refers to Lisa in “a cage fight” against cancer (for more on this topic read Lisa Adams And The Victimoloy Of Cancer). Margaret Sullivan, writing in the New York Times points out that “when Ms. Adams has made it so abundantly clear in her own work that she objects to the use of fighting metaphors in describing experiences with cancer, it was regrettable to use them throughout a column about her, starting with the first sentence.”

6. Society’s discomfort with death

Once more, society’s discomfort and unease when confronted with the reality of dying – what Meghan O’Rourke calls “a stark and tone-deaf reminder of just how repressed and ahistorical our public relationship to dying and death is today”.

Could it be that Keller’s discomfort with her “obsession” with Lisa’s tweets is a reflection of society’s discomfort with death and dying? People like Lisa and like many of my brothers- and sisters-in-mets (my fond term for people who have metastatic breast cancer)—people like me—cause discomfort to some because we dare to bring our experience into the full light of day. We cause discomfort to some because we are living, living in acute awareness of our impending death, living in pain but living as fully as we can while we are dying.

Lani thinks that the discomfort is actually more personal for Emma Keller.

Nowhere in the article does Keller talk about her own 40 day brush with cancer, even though she wrote about it publicly, also in the Guardian. This, to me, was the screaming subtext for the combined fascination and horror she expressed about Lisa’s writing. In the earlier piece, she ended by talking about a post-treatment scare, saying: “My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal. The cost is insane, the trauma has been considerable.” Yes, I am sure it has. Why does she not connect that insight to her own self-described obsession with Lisa’s experiences? That’s not voyeurism: that’s having some PTSD to work through.

Death will come to all of us, but it seems society is still in denial of this fact, and denial as Lois points out in a comment here takes so much energy. Lois continues that”Perhaps the only way to “put it all behind us and go on” is to face one’s mortality squarely, then do what you have to do, take each step, live an hour or a day at a time? ” Victoria agrees:

More and more I believe that until we figure this out (that we are all going to die one day and it’s not up to us when) we are only half alive. It’s when we come up against the possibility of death that we start taking the question, “How shall I live?” seriously. There are poignant and powerful answers to be found once we know enough to start listening. No better place to begin than through other people’s experiences

“Perhaps the most unsavoury aspect of the Kellers’ commentary has been the tacit suggestion that Adams’ choices in dying are wrong.” writes Bianca Nogrady, author of The End: The Human Experience Of Death. ” Dylan Thomas’ immortal line inevitably rears its head here, as it’s clear Adams is determined not to ‘go gentle into that good night’ and is raging loud and proud against the dying of the light.” Bill Keller implies that there is a morally superior way to die. The “humane and honorable” approach his 79 year old father-in-law took in refusing treatment other than painkillers is unfairly juxtaposed against the “frantic medical trench warfare” “of a young mother of three.

Gayle Sulik continues this theme in her article in Psychology Today: ” the Kellers essentially told the public that and it would be more ethical for her, and anyone with a terminal illness, to just die quietly. What’s more, they should have the dignity to refrain from shouting their experiences from the virtual mountaintop for everyone to hear.”

Virtually every story published or broadcast during Breast Cancer Awareness Month follows the same script. Person is diagnosed with breast cancer, person bravely endures treatment that can involve surgery, chemo (with attendant hair loss), radiation and possibly complex reconstruction surgery. Through a positive attitude and with the support of family and friends, the person triumphantly concludes treatment. Often, celebrities with early stage breast cancer are brought out to share their tips from their “journeys.” We seldom–if ever–hear the stories of people with metastatic breast cancer. Indeed, many people with metastatic breast cancer are treated as though they have failed–they didn’t try hard enough, obviously, or their cancer wouldn’t have come back. People want closure and that’s not something we have. .

8. A Blessing And A Blunder

A blessing and a blunder is how Renn chose to characterize the debate, and perhaps this week has seen the first salvo in a new debate about how we live our lives online and the choices we make when it comes to how we die.

I know Lisa and admire her for her candor. It takes courage to share what it’s like, as she does – good days and bad. Yes, her story is imperfect. But so is everyone’s. I see beauty in her story, unedited.

This is fantastic, Marie – way more than a Round Up! I have been struggling to keep up with the various posts and discussions so to have your excellent “more than Round Up” of the critical points and discussions is so helpful.

Readers will come away with a new appreciation of why Bill Keller is, indeed, a cotton-headed ninny muggins, and well as some urgent metastatic breast cancer issues that would make far more compelling Op-Ed fodder.

Thanks to those of you who left a link to your own blog posting on this important topic! It took many hours to put this together, but even though I tried to share as many of your blogs as I could on here, inevitably I missed some important views in the process. That says everything about my own human error, and nothing about your writing! So, please, I do say this every week, if you have written something which I have missed, DO leave a link for us to be able to visit your blogs. Have a great blogging week everyone!

Excellent compendium of patient online engagement. One of the more cogent points being the ongoing conversations cannot be sampled like a consumer product test marketing study. In fact, the major oncology hospitals, centers, and research/ universitiy enclaves should try and engage as well – because we are not doctors, but honest and outspoken and scared and in need of information and need to provide feedback to a broken down system in the US especially,which is run by insurers and big pharma. Listening and taking notes isn’t enough. And the patien voice gets louder not quieter over social media, blogs, and online discussion groups.

". . .and the world cannot be discovered by a journey of miles, no matter how long, but only by a spiritual journey, a journey of one inch, very arduous and humbling and JOYFUL, by which we arrive at the ground at our own feet, and learn to be at home."
Wendell Berry